Sara's Neurofibromatosis

Posted By Ann on August 26, 1997 at 20:29:38:









My daughter, 7, was diagnosed with NF at age 3 in 1994. She had
surgery to biopsy (& hopefully remove) a tumor which was pressing on her
right femoral & right sciatic nerve. The tumor was benign, but due to its
involvement in and around the nerve, and the location (just off the spine),
the neurosurgeon was unable to remove any of it.
I have been wondering ever since if there was any way other than surgery to
remove it and the other 3 that have appeared nearby in subsequent
MRI's. Her right upper leg is fairly thin, her muscles are weak there,
but she gets around incredibly well. She is as active as possible
and I marvel at her otherwise good health. She has an MRI once a year.
I once asked the neurosurgeon if that vibrating knife could have been used
to break up that tumor and he felt it could not be. There have been
no other treatment recommendations. In your opinion, is a visit to another
surgeon recommended? Would there be a way for me to choose one who has had
positive results with that instrument in these cases? Is that the Gamma
Knife?
Thanks very much for considering and answering my question.